Jan Tuckwood

Susan Spencer-Wendel's right thumb - the finger she depended on to type her memoir in 2012 - doesn't work very well any more, but it has one more important job to do: help her sign copies of Until I Say Good-bye. ''I'll get a purple ink pad,'' she says, ''and sign with a thumbprint.''

Then she laughs and muses that it would be so great if ink pads came in ''Raisin Rage'', her favourite lipstick colour, and the colour she wanted tattooed onto her lips when she lost her ability to manoeuvre a simple tube of lipstick.

''Vanity, thy name is Susan,'' she writes in one funny chapter about getting permanent make-up, which is the ladylike term for ''tattoo your face''. ''Yes,'' she writes, ''that is how vain I am. I didn't think twice about needling ink into my eye sockets and lips.''

Written with just one finger: Until I Say Goodbye: My Year of Living with Joy by Susan Spencer-Wendel with Bret Witter.

The illness that is withering Spencer-Wendel's muscles - amyotrophic lateral sclerosis (ALS), or motor-neurone disease, also known as Lou Gehrig's disease - has taken away her ability to slather on lipstick and dance in four-inch stilettos and hug her three children tight.

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But her ability to laugh at herself is as keen as ever. And so is her desire for the perfect plum pucker - even if it must be achieved excruciatingly, dot by dot, with the zap of a tattoo needle.

Desire is an emotion Spencer-Wendel has pondered quite a bit this past year. Desire fuelled her when she landed a $2 million book deal and had to write 89,000 words in four months with her one finger that could still type. Nobody writes a book that fast, says her collaborator Bret Witter, a publishing veteran who has been a co-writer on five best-selling books.

Though Spencer-Wendel had spent 20 years writing news stories, most of them for The Palm Beach Post, tackling a memoir - especially as she grew physically weaker - would be a monumental first. The task seemed overwhelming - to almost everyone but her.

On the day she got her ALS diagnosis in June 2011, she decided to live with purpose and intent - to plan special trips with her most cherished loved ones and to plant a vivid ''garden of memories'' to be tended in their souls.

She also planned this legacy: her own soul, poured onto the pages of Until I Say Good-bye: My Year of Living with Joy.

She owed it to the US publisher, HarperCollins, who wrote the cheque. And she owed it to her children - Marina, 15, Aubrey, 11, and Wesley, nine, who are the benefactors of a gift worth far more than money. She would tap, tap, tap until the book was done, she vowed. ''Such is the power of desire.''

Before he met Spencer-Wendel, Witter worried whether they could meet the deadline. ''I thought, 'This is going to be impossible. We only have four months. How can she possibly do this?' '' he says.

She told him to stop worrying. Typing three or four pages a day on her iPhone, Spencer-Wendel would then send them to Witter. ''She could only see 16 words at a time on her phone, so my job was to give her context - to move the furniture around until it was all in the right place,'' he says.

The result is an emotional roller-coaster of a memoir - not a self-help book and not a dreary book about a disease. It is a story about relationships, Witter says, a ''love story about a woman who is in almost every way an ordinary person, and everyone can relate to her''.

Spencer-Wendel writes about her trip to see the Northern Lights with her best friend and her 20th-anniversary trip to Budapest with her husband, John. She writes about her cruise with her sister and her adventurous trips with her children.

One of the most poignant chapters describes her visit with Marina to the New York bridal store Kleinfeld's. She thought Marina might want to try on a few dresses. ''I simply wanted to make a memory. I wanted to see my beautiful daughter on her wedding day. I wanted to glimpse the woman she will be,'' Spencer-Wendel writes. ''Maybe I would cry. Mothers cry, right? But I knew I would laugh, too. Because I would be with Marina. I would be imagining her happy.''

As Spencer-Wendel learnt throughout her ''year of living with joy'' you can set out with the expectation of one memory and get a completely different one - and you can be happy with that one, too.

And this is what has amazed Witter about Spencer-Wendel as she wrote about her adventures and her relationships, both strong and delicate. ''She never set an expectation in her mind that an experience has to be a certain way or it's a failure. One day she said to me: 'I'm going to enjoy the experience, whatever happens.' And she wrote the book the same way all along, letting the experience of writing it guide her through. When you live like that, without expectations, you enjoy life more,'' Witter says.

When you're 46 and probably won't see 47, you set your mind to enjoy each moment. ''To want something you can never have,'' Spencer-Wendel writes, ''that is the path to the loony bin.''

People often think terminal illness changes a person, but that's not true, Witter says. Terminal illness makes you more of what you already are - and Spencer-Wendel was already an honest and direct self-professed ''hippie with a sense of style''.

Where did this straight-shooting, fun-loving, open-to-just-about-anything personality come from? It did not come from her adoptive parents, Spencer-Wendel knew.

She realised at a young age that her parents, Tom and Tee Spencer, who adopted her and her sister Stephanie as infants, are not as naturally candid and open as she is. They express love and look at the world differently from her, particularly her mother.

Their relationship got even more complicated when Spencer-Wendel met her birth mother in 2008 - and realised quickly that the woman who possessed her same blue eyes and shapely legs had her same free-spirited and direct attitude, too. She also travelled to Cyprus to meet the family of her biological father, a doctor at the Mayo Clinic who died without knowing he had a daughter.

This nature versus nurture discovery makes Spencer-Wendel's life more than ordinary - and provides another dramatic detour for readers.

The chapters about her ''real mother, the one who raised me, Tee,'' were the hardest for her to write. ''I wanted, in this last year, to close the loop with Mom and Dad. To heal the rift that had formed as I explored my birth parents, something that did not diminish my love for them,'' she writes. ''I understand now that that moment will not occur. We will not talk our way to understanding. It's just not in their nature. And as ALS reminds me each day, you can't fight nature.''

Spencer-Wendel says the book's message is to live with joy. ''Set your intention and do it. And accept nature. No matter what happens to you … accept nature.''

As her body weakens, her sense of peacefulness becomes stronger. This is obvious to readers of the book, who see her transition from a frenzied working mother to a woman who sets her mind, moment by moment, to seek peace.

Her transition is especially obvious to her husband of 21 years, John Wendel. She has let go of all of life's small irritations, he says, even as she has learnt to savour small delights, such as the little weevil who used to keep her company as she wrote in the chicken hut in their backyard. ''She'd tell everybody: 'Don't kill that weevil! He's my friend.'''

John Wendel speaks for his wife now. Her words are hard to understand and sometimes he has to ask her to spell the word she wants.

It is Wendel who lifts her, feeds her, bathes and clothes her, and who scratches her nose for her. ''You don't realise how many times you scratch your nose until you can't do it!'' he says.

John took his wife to the Kennedy Space Centre for a romantic 21st-anniversary celebration on Valentine's Day, because she has become increasingly fascinated by the mysteries of the universe.

''It's humbling,'' she says. ''It is the miracle of nature.''

Even her husband is amazed and baffled by her positive state of mind. ''I married her so I could spend the rest of my life trying to figure her out,'' he says.

The rest of their life together - nobody knows how long that will be. But Susan Spencer-Wendel sticks with the words of Buddha: ''Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment.''

New York Times

Until I Say Goodbye is published by Two Roads, $27.99.

Review

How do you ''live with joy'' when your body is packing up, muscle by muscle; when the year ahead might be your last? This is where the greeting-card platitude of ''living to the full'' collides with the harsh reality of dying.

Spencer-Wendel, 45, has Lou Gehrig's disease - a degenerative, fatal neuromuscular disorder - and doesn't pretend it's easy. But she shows with humour and aplomb how it can be done. You take special trips with your husband, children and close friends, even though every trip weakens you. You search for the biological father you never knew and discover your other family. You accept that your parents love you but can't talk about your impending death. You prepare your funeral. You live with an intensity undreamt of during your old ''autopilot'' life.

Until I Say Goodbye is tough-minded, funny and without self-pity. It's as much about how to live as how to die.